CFSAC Public Comment, January 2017

I prepared comments for the January 13, 2017 CFS Advisory Committee meeting, but when my time arrived I decided to wing it. Below is my best reconstruction of what I said, a mixture of my prepared and spontaneous remarks.

Start as you mean to go on. This is a commonly used phrase at New Year’s – supposed to be motivational, I guess. It means: Be intentional as you begin the new year. Start reading more books or taking more walks or whatever your goal may be, because how you start influences how you will continue forward.

I’m going to take my own advice and toss my prepared comments. Based on the discussion this morning, I want to scream: Let’s. Start. Now.

Start by tossing what’s been done.

Start by thinking outside the box.

If you want to design better educational materials, if you want to recruit new investigators, if you want to progress a treatment to approval within a decade then it is time. It is time to roll up our sleeves, work hard and work together.

I’ve been an activist for close to two decades. We have got to do something different in order to achieve different results. It’s time to ask how we can achieve the results we want, instead of following the same paths and procedures that are entrenched in the system.

There is so much uncertainty about the future budgets for research and assistance programs, and ME patients are extremely vulnerable. Many are wholly dependent on SSDI, Medicare and Medicaid. All of us  – including all of you in the room who have a different disease or health condition – rely on the protection of the pre-existing condition rule to obtain health insurance. The vast majority of patients with ME have great difficulty getting appropriate diagnosis and care, and do not have access to the handful of specialists nationwide. And our future is very much dependent on full funding for NIH in general, and ME research in particular.

If we don’t do this, then I am worried. We are losing people with ME to suicide because they are too sick to go on. Efforts to help us are too slow and too small and too easily ignored. Promising scientific ideas gather dust while we wait for funding, and the ME researchers and clinicians alike are having difficulty finding experts to replace them as they retire out.

If we don’t do this, then I am scared. I am scared that I will recite variations of this litany year after year, as I get older and the last of my supposedly productive years leach away.

Let’s demonstrate forward thinking leadership, and set a high standard with which to measure federal agencies’ performance. Let’s sit down at the table, as equals, and quickly. We need to take ACTION. I have volunteered for every stakeholder engagement initiative I can. I am ready and willing to work with you for solutions. This is the only way I see to create a better future for people with ME.

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RFA Ticker, 1/16/17


NIH issued no RFAs last week, but we have plenty to talk about after Dr. Vicky Whittemore’s presentation at the CFS Advisory Committee on Friday. Dr. Whittemore’s announcement was simultaneously welcome and disappointing.

During her update to the committee on NIH activities, Dr. Whittemore revealed how much money the long delayed RFAs will offer:

rfaplanThe RFAs should total approximately $29,750,000 over five years. Dr. Whittemore said that this money is in addition to the expected investigator initiated proposals that we’re familiar with. She also said that it was challenging to get these Institutes to commit these dollars.

It is notable that ten of the twenty-seven NIH Institutes are contributing money, plus a one-year contribution from the Office of the Director. The bulk of the money is coming from the National Institute of Allergy and Infectious Diseases and the National Institute of Neurological Diseases and Stroke. This is not surprising, as most grant funding for ME comes from these two Institutes. The National Center for Advancing Translational Sciences is restricting its contribution to the RFA for the Data Management Center, which is a bit disappointing because NCATS is among the leaders at NIH in incorporating stakeholder input into its funded studies. It would be nice to take advantage of the existing infrastructure there.

What does this mean in terms of how the money will be used? The payout should look something like this:

  • Year 1: $6,750,000
  • Year 2: $5,750,000
  • Year 3: $5,750,000
  • Year 4: $5,750,000
  • Year 5: $5,750,000

This money will be divided between the RFA for the Data Managing Center and the RFA for the Research Consortium. I think Dr. Whittemore expected two to three sites would be funded, plus the Data Center (which does not necessarily have to be at another institution). I’m guesstimating $1.6 million to each of three sites and $750,000 for the Data Center, per year.

Is this good? Well, yes, in that something is better than nothing. And also yes, because NIH is making a five year commitment. Based on Dr. Whittemore’s comment at the IACFS/ME meeting that 2016 funding for ME would be doubled in 2017, I had personally predicted an RFA total of $7 million maximum for one year. That was a little high, it turns out, but I did not expect the five year commitment.

But this is also disappointing. Measured by the overall NIH yardstick, $6 million a year for a research consortium on a disease that costs our economy $20 billion a year is not even peanuts. NIH gave $7 million a year to Fragile X Research Centers (Fragile X is a rare genetic disorder). NIH’s Autism Center of Excellence Program is funded with about $20 million per year. And the huge NIH Pain Consortium offers myriad funding opportunities, including a number of research center programs.

I am deeply concerned that some of the Institutes are contributing only grudgingly. Furthermore, I think it’s unlikely that there will be additional RFAs for at least two or three years while we wait for the Consortium to get going and bear fruit. The successful Consortium applicants better knock this out of the freaking park. We need highly economical management of projects that produce extremely promising interim results. That’s the only way we can secure bigger commitments quickly.

Furthermore, we need researchers to submit proposals outside the RFA mechanism. Lots and lots of proposals. Again, the only way we will see an increase in dollars is if more proposals are successful. I know grant writing is a pain in the butt. I’ve watched four members of my family go through the process repeatedly over the years. But you can’t win if you don’t play the game. I would love to see the number of applications double in 2017 and then double again in 2018. That demonstration of interest would send a loud message to NIH that we are “shovel ready.”

I suspect that some (many?) advocates may want to focus on thanking NIH for this investment, and not say anything negative about it. But here’s the thing: when you are starving to death on a cup of rice a day, the addition of another cup of rice sounds like a banquet, but you are still going to starve to death.


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Comment by Terri Wilder, 1/12/17

Terri Wilder made these remarks at the January 12, 2017 meeting of the CFS Advisory Committee. I’m pleased to publish her complete comments, with her permission.

Good Afternoon- My name is Terri Wilder and I’m a person living with ME. It has been 10 months since I was diagnosed with this illness. In the past ten months my health has been up and down. I had to drop out of my PhD program after finishing all of my course work and passing my qualifying exam. Sadly, I only had my dissertation left to complete my degree requirements. Despite this life changing event, I have been part of two ME protests, two meetings with the Acting Assistant Secretary of Health and Human Services Dr. Karen DeSalvo, a meeting with the New York State HHS regional director, several meetings with leadership at the New York State Department of Health (to develop an ME webpage and create free state-wide ME CME/CNE content), convened several phone calls with a very high ranking NIH leader, and was the brain child behind the most recent call to action to get the NIH to release the promised ME FOAs. Simply put, I’m an activist fighting for my life.

What I would like to talk about today is how able-bodied privilege and microagression impacts the lives of people with ME. “Microaggression” is a term coined by a Harvard professor in 1970 to describe insults and dismissals he regularly witnessed non-black Americans inflict on African Americans. Psychologist Derald Wing Sue states that microaggression is “brief and commonplace daily verbal, behavioral, or environmental indignities, whether intentional or unintentional, that communicate hostile, derogatory, or negative slights and insults towards people.” People with ME encounter microaggressions frequently. Microagressions take place in everyday conversations, during ME meetings, during presentations, on websites with ME content, etc— often making them hard to call out.

So— when we put microagression into the context of ME the following examples come to mind: wearing scented body products in areas labeled as scent free is microagression. Telling a person with ME that “you don’t look sick” or “you look so normal” or asking them “you can’t give me ME can you?” is microagression. Inviting a speaker to give a presentation to staff at a government institution who is a documented misogynist and spreads stigmatizing untruths about person with ME is microagression. Placing damaging and inaccurate information on a government website about ME is microagression. Charging medical providers for clinical education on ME when we are so desperate to get ME medical education out in the world is microagression. Delaying the release of ME research FOAs is microagression. Stating that you don’t think a committee needs more people with ME on it is microagression. Holding CFSAC twice a year is microagression. Placing thinly veiled GET information in a publication about ME that goes out to thousands of public health professionals around the world is mircoagression. And referring to my illness as chronic fatigue syndrome is microagression.

Constantly referring to me as a patient is microagression. I’m not a patient 24/7 days a week. I’m a sister, friend, and daughter. I’m a person first and should be referred to as such. Using person first language is respectful and acknowledges that while ME is a part of my identity I’m not an illness and am only occasionally a patient in a medical provider’s office.

Projecting an “Us” vs. “Them” mentality is microagression. Illness lies on a spectrum. The reality is that anyone can become ill at any point in his or her life. So— if an opportunity to meet with a person of power OR a ME workgroup or committee seat comes open and you don’t immediately think of it as an opportunity to include a person with ME you are reinforcing the idea that an able-bodied person is a better fit. And that simply isn’t true. That is microagression.

So— when you want suggestions on how to engage “stakeholders” start by checking your able-bodied privilege and how you participate in microagression. Stakeholder engagement isn’t just about convening regional meetings, phone calls, or sending out a survey to get input— it is about checking your privilege at the door every time you engage with or on behalf of a person with ME.

ME affects all of us differently. Since illness is on a spectrum from “more ill” to “less ill” I challenge people with ME to also think about abelism, microagression, and their privilege. For example, when you advocate on behalf of the community do you forget about the people who are completely bed bound or unable to speak? The most ill are probably people you will never meet because they can not come to a meeting like CFSAC or participate on advocacy calls or attend a ME conference in Florida.

I will close by sharing a story. I just recently finished reading “How To Survive A Plague” by David France. I encourage everyone in this meeting to at a minimum watch the documentary of the same name. It tells the story of how people with HIV fought for their lives during the early years of the AIDS epidemic. Not surprisingly, I was struck by the many parallels between ME and HIV in the early years of the epidemic when there was little government response and people with HIV were neglected and left to die. In the book Michael Callen (who was a person living with AIDS) gives congressional testimony. During his testimony he states, “So whatever you or your colleagues do or don’t do, whatever sums are or are not allocated, whatever the future has in store for me and the hundreds of men, women, and children whose lives have been irrevocably changed by this epidemic, the fact that the Congress of the United States did so little for so long will remain a sad and telling commentary on this country and this time.” As I read this I, of course, thought about my life and how one day I might give congressional testimony literally saying the same exact thing about ME.

People with ME are fighting for their lives. Don’t dismiss our activism in public forums, secure high-level meetings without us or send emails to us when you disagree with our published opinions. Don’t tell us that we got you in trouble with your boss when we wrote them a letter. It isn’t appropriate and is a form of microagression. We are engaging in any means necessary to end this illness. Join us or leave. This is about our lives not yours.
Support us in our struggle against those who ignore us, stigmatize us, discriminate against us, won’t provide medical care to us, won’t fund RFAs to improve our lives, don’t believe us, and undermine our efforts. Work with us to create spaces so that we are involved in every level of decision-making, are included in forums with equal credibility as other participants, and have the opportunity to share our own experience and knowledge.

And if you feel like your able-bodied privilege could possibly get in the way of the ultimate goal of curing this illness I encourage you to tape a picture of a severely ill person with ME by your computer or phone or keep it in your wallet so you can check your able-bodied privilege at the door when you literally walk into a ME meeting, when you meet with a high ranking government official on behalf of the ME community, create a clinical education video, respond to our email and calls, or when you create other materials that reflect our lives.

Thank you.

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Another Reason to Stay

celloMy Mom played the cello every day, even while enduring chemotherapy. Her last lesson was less than two months before she died. Mom loved the cello, but I never really understood her dedication. Even when I took piano lessons as a kid, I didn’t feel much affection for the act of playing an instrument. I’ve always loved cello music, but not the way Mom did.

After she died, I took up Mom’s cello. I wasn’t confident that my sick body could sustain the effort of playing an instrument. To be honest, I only decided to try lessons because I wasn’t ready for the cello to be sold and leave the family. But through coincidence and good fortune, I found Krysta Fogel, a cello teacher who was perfectly suited to finding a way for me to play without pain. Or at least without pain until my fingers crack and bleed.

Oh yes, my fingers bleed. I bleed because I have fallen in love with the cello, and the only thing that stops me from playing is exhaustion and pain. How could I not love an instrument when “to play it you must embrace it, and its resonating chamber rests upon your heart.” I often find myself resting my left cheek on the tuning pegs as I practice.

I feel deeply connected to Mom when I play her cello. As my arms wrap around the instrument, it is like embracing her again. Sometimes I have actually hugged the cello and pretended it was her. I have all of her sheet music, and I love finding her pencil marks. Sometimes it’s just a check mark or something circled; sometimes it is the date in her handwriting. It is incredible to practice a Suzuki exercise, and know that she played it in December 2003.

But playing the cello has also made me feel her loss more acutely. I want so desperately to talk to her about it that even my teeth hurt. Did she know of Jacqueline du Pre? Why did she prefer Yo-Yo Ma’s version of the Bach Cello Suites to Pablo Casals’s definitive recording? What was her favorite piece to play? How did she learn to play double stops? What would she think about my being the cellist great granddaughter of Gregor Piatagorsky? And what was her own teacher-pupil cellist lineage?

Last week, our brother-from-another-mother asked me if I had ever heard of cellist Zoe Keating. When I said no, he recommended her solo albums. This friend does not recommend things lightly, so I immediately bought her music. I didn’t make it past the second track on her album Into The Trees because I was weeping so hard.

Keating records and loops her music as she plays to create an entire symphony of sound with just her cello. I can’t describe the song “Escape Artist;” you just have to listen to and watch the video. I feel like Keating spun that song from the fibers of my soul. Asking you to listen to it is one of the purest forms of self-expression I have. That song captures an essence of me that I did not know was there.

The last two years have been filled with loss, near misses, worry, conflict, loneliness, anger, and depletion. There have been days when I have wanted to disappear into a blanket fort and never come out, and I discovered the Wall of Nope. Yet these years have also contained strength, connection, forgiveness, love, learning, and perhaps even the beginning of a miracle. For every reason I’ve had to quit, there have been at least two reasons to keep going. I am thoroughly blessed and surrounded by family and friends who  will never let me fall. I may be covered in scratches, bruises, skinned knees, and road rash, but by everything that is sacred I am still here.

In the raw pain of self-discovery as I listened to “Escape Artist,” I realized this is another reason to stay alive. A random recommendation from a friend led to this profound and unexpected experience. There is always something new to learn. One human life is not long enough to discover all that is beautiful and interesting in the world. And the next wonderful thing may be completely unexpected; in fact, it probably will be. I finally understand why Mom played this cello until the final days of her life. Even on my lowest day, there is someone I love, and music I love, and a path into the trees.

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RFA Ticker, 1/9/17


So. Is anyone surprised that it is January 9th and we do not have the promised RFAs? I didn’t think so. Will we hear an announcement at the CFS Advisory Committee meeting this week? I don’t know.

The question that I pose to all of you is: are you ok with this? Are you satisfied with how this is unfolding? Is NIH working quickly enough for you?

No? Then I suggest you do something about it. Because if you are not happy with this, you shouldn’t just cross your fingers and hope this all works out.

Here are the current cumulative RFA numbers:

FY 2017 FY 2016
RFAs Issued 121 352
Dollars Committed $680,707,563 $2,840,680,617

And here is the table for FY 2017 alone:

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
1/2/17 1 $43,000,000 Zero
12/26/16 0 0 Zero
12/19/16 2 $10,000,000 Zero
12/12/16 28 $125,950,000 Zero
12/5/16 14 $114,800,000 Zero
11/28/16 10 $47,660,000 Zero
11/21/16 6 $42,780,000 Zero
11/14/16 6 $44,350,000 Zero
11/7/16 10 $25,490,563 Zero
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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Zero, Zilch, Zippo


Zero, zilch, zippo, nada, cero, null, nulla, sifr, nul’, ling, nialas, sero, naught.

No matter how you say it, we got nothing.

Despite the promise in October 2015 that a request for proposals would be issued “soon.” Despite Dr. Collins’s statement to NPR in November 2015 that NIH would “ramp this up.” Despite Dr. Vicky Whittemore’s estimate at the May 2016 CFS Advisory Committee that the RFAs would be issued by June or July 2016. Despite NIH’s public statement in the Federal Register in October 2016 that the RFAs would be published in December 2016.

We. Got. Nothing.

Specifically, NIH announced on the last business day of December 2016 that the RFAs are now expected to be published by the end of January 2017. NIH said that “due to a high level of interest from multiple NIH Institutes and Centers, several rounds of revisions were required, and a number of finishing touches are necessary to optimize the funding announcements.”

Remarkably, Dr. Francis Collins even made a statement on Twitter:

This very public update on the status of the RFAs is clearly the result of activism. First, Terri Wilder/MEAction and I launched a public effort to urge Dr. Collins to keep his promise to the ME community. Then Janet Dafoe suggested that people with ME tweet Dr. Collins with their pictures and a statement that they are waiting for funding.

This filled Dr. Collins’s Twitter feed with dozens of pictures of severely ill people with ME, in a very moving wave of activism.

These public acts holding Dr. Collins accountable for his broken promise led to the statement on Friday about the delay. The reason, according to Dr. Collins and the public announcement, is that a high level of interest from the Institutes resulted in revisions and “finishing touches.”

These RFAs have been in progress since June 2016. In October 2016, NIH said they would be out in December. Was there an increase in the level of interest from the Institutes between October and December? More importantly, will this increased interest lead to increased funding? Dr. Whittemore told me by email in December that the money was committed, so that the continuing budget resolution would not impact the funding. If the money was committed by December, I don’t think it’s likely there was a last minute surge of interest and funding.

NIH has moved the goal posts again, this time to the end of January 2017. A reasonable person might think that this public statement of the new deadline would ensure that NIH meets it. But that reasonable person should take into account the previous public statements by Dr. Collins and by NIH in the Federal Register. NIH has not come through on previous self-imposed deadlines. It remains to be seen if this time it will be different.

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CFSAC Meeting Information and Logistics

The federal CFS Advisory Committee meeting is only two weeks away. This will be an in-person meeting, but will not be held in the Health and Human Services building. Denise Lopez-Majano and I reached out to HHS for important information about the meeting logistics.

Location: The meeting will held on January 12th and 13th at the Barbara Jordan Conference Center (2nd floor) of the Henry J. Kaiser Family Foundation – 1330 G St, NW – Washington, DC 20005. The building is ADA accessible (modular wheelchair ramp, elevator, etc). At this time we do not know about security procedures for entering the building. For those arriving by public transit, the Metro Center Station, 607 13th St NW, serviced by the Blue,Orange, Red and Silver lines, is about 2 blocks east of the Kaiser Family Foundation. The station’s only street elevator is on the east side of 12th Street north of G Street.

Important Note About Location: The Kaiser Foundation building is only three blocks from the White House, and the meeting will be held one week prior to the inauguration. We have no information on whether there will be traffic disruptions or parking issues in the vicinity.

Rest Area and Restrooms: The meeting space will have a lounge area (sofa, loveseat) where people can rest while still listening to the meeting. An additional small, quiet rest area is located on the 3rd floor (accessible via elevator). The restrooms are estimated to be about 50 feet away from the conference room.

Food Service: There will be no food service at the meeting, and the building does NOT have a cafeteria. You will be permitted to bring your own food, have food delivered to the building, or leave the building to get food. There are several takeout places within a block or so, including a pizza place right across the street.

Registration Deadlines: If you wish to attend the meeting in person, or if you want a public comment slot (in person or by telephone), you must send an email to by the close of business on January 5, 2017. You may also submit written comments (details in the Federal Register notice), and we have heard that the deadline for that is also January 5th.

Public Comment Topics: You may offer public comment on any topic relevant to ME. However, the Committee has specifically requested comment on:

  • school accommodation issues
  • methods/programs for meaningful stakeholder engagement
  • clinical care and medical education challenges
  • and/or the stigma associated with this disease

Don’t let this important opportunity go to waste. Do what you can to make our voices heard. Attend the meeting, offer public comment, or watch the meeting via webinar. CFSAC needs to hear from us so that it can make the best possible recommendations to HHS.

My thanks to Commander Gustavo Seinos, the Designated Federal Officer of CFSAC, for providing some of the details about logistics.

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A Myalgic Carol

Or, A Most Merry Tale of Encephalomyelitis, by Joe Landson

59Dr. Stephen Straus was surely dead. Lo, he had been dead these nine-and-one-half years, but that made no difference to Ebenezer Scrooge, MD, PhD, as he locked up the Office of Fatigue and Lassitude, or OFAL as it was known, for the night.

OFAL handled what had been known as neurasthenia, myalgic encephalomyelitis, chronic fatigue syndrome, ME/CFS, systemic exertion intolerance disease, or whatever new epithet it now went by. Scrooge had been managing the office — and handling the ornery patient population — since Dr. Straus had retired in 2006. Dr. Straus died of brain cancer in 2007, but the problem of ME/CFS remained unsolved, and dumped on Scrooge.

The problem of the illness was one of classification, he ruminated as he shrugged into his long gray coat for the short walk to his beige sedan. These patients seemed to have nothing in common beyond their vague, ill-defined symptoms. Dr. Straus had never found a common thread; so, of course, there couldn’t be one. What to make of this heterogeneous patient community? One solution was to group them into smaller categories based on symptoms, rather than look for data that might answer the question. So Scrooge had been crafting a system for dividing them into zones of heterogeneity.

His rumination was interrupted by a distraught middle-aged woman in a long red coat, of the cut and style fashionable about a decade prior. Kleenex tumbled out of her scuffed, capacious purse as she shuffled uncertainly towards him in the wide, empty hallway of NINI, the National Institute of Neutrophilic Inquiry.

“Dr. Scrooge? I’m Laura Tompkins. They say you can help us with ME/CFS. You’re the expert. I don’t care about myself, it’s my son Timothy. They’re threatening to kick him out of school, and blame me for his being sick…”

“How did you get in here?”

“Oh, I just told them I was an ME denier. They let me in, and invited me to give a speech.”

“Well, in any case, you shouldn’t be here.”

“Now that I am, can you tell me what you’re doing about ME/CFS?”

A tense pause. “I’m dividing it into zones.”

“What are you actually doing for patients?” Laura Tompkins demanded. “For housebound adults, and children like my son Timothy?”

“Madam, I’m a researcher. If your son needs help, are there not psychologists? Is there no Graded Exercise available?”

“None of that helps! Why don’t you DO something? Why can’t you have an actual treatment trial? Why did you give the disease an awful name?” Laura asked.

Scrooge shook his head. “OFAL is an acronym; everyone in Washington has one!” he snapped.

“No, no, I mean AWFUL!” Ms. Tompkins cried in frustration.

“There seems to be an echo,” Scrooge grumbled. He was losing patience with these patients. And Ms. Tompkins had lost patience with him. She watched him go, shaking her head in disbelief.

Scrooge turned out of the NIH parking garage and drove home towards his Michael Bolton album collection. Traffic was light. It was a bitterly cold late December evening, but strangely dry and bare through Bethesda and the I-270 corridor.

After a tasteless microwave meal, Scrooge pulled his chair up to his home computer. He wanted to check the citation and view counts for his latest paper, on building a framework towards creating zones for ME/CFS classification.

Scrooge froze. Looking at his computer screen, Dr. Scrooge saw Dr. Stephen Straus’ face floating before his eyes.

He checked the cable. He checked the switch. The computer was not on. He always turned it off when he left for the office in the morning, always turned it on after dinner to check the citation counts.

Scrooge shook his head clear. He must be seeing things. He turned the computer on, and did a virus scan before he settled into tabulating.

That’s when the printer started up.

The yield was small at first, but soon there were reams — reams of paper quoting Straus, every time he had thrown shade at ME/CFS, or expressed disdain for patients. Remarks based on slipshod studies. Remarks about psychiatric symptoms. Remarks about patients needing help to drive their BMWs. (Laura Tompkins had never been in a BMW; and at the rate he was going, Tiny Tim Tompkins would never drive anything.)

As he tried to stem the tide of printing, Scrooge froze again. There was Straus, seated in Scrooge’s worn, puke-green recliner.

“Good evening, Ebenezer,” Straus intoned.

“Wha— What is…”

“This is the paper trail I authored in life, Ebenezer,” Straus answered Scrooge’s unfinished question. “Is it strange to you?”

“N— No.” He had been peddling these same half-truths and equivocations for years. Nothing had really changed.

“I was a respected scientist; I did real work. But my lot now is to wander amongst the lost souls of those I disparaged. They’ve shown me the true effect my words had on them.”

Scrooge said nothing. Perhaps that microwave meal was past its expiration date and he had indigestion, he thought.

“It’s not too late for you, Scrooge. Will you make an effort to help these people? Or will you continue to disparage them as I did?”

“But how can I help?”

“Are there not psychologists? Is there not graded exercise?” Straus taunted Scrooge with his own words.

“It’s not like they’re dying, or anything!”

“True. These patients are not dying in droves. Rather, many experience a living death.”

“That’s nonsensical. How can they be dead and alive at the same time?”

“Yet I am dead these nine and one half years,” Straus said soberly. “And still I live, dominating the ME/CFS research agenda at NIH. What’s that, if not a living death?”

“Point taken,” Scrooge muttered. He had never moved outside of Straus’ shadow, and knew he likely never would.

And so Straus sent Scrooge on a journey with three spirits: The Ghost of ME Past; The Ghost of ME Present; and The Ghost of ME Future.

The Ghost of ME Past showed Scrooge the early years in the AIDS crisis, when NIH suspended double-blind trials to find something, anything, that stemmed the tide of death. Scrooge was young and eager then. He remembered it was so exciting, actually helping patients, instead of insulting them and dividing them into zones! But the Ghost also showed Scrooge how ME patients languished as years went by with no treatments. Researchers became interested and then turned to other places, where the money was. And Scrooge’s old friend Straus pronounced his conclusion that ME patients just needed to buck up, stop whining, and think themselves to health.

The Ghost of ME Present showed Scrooge the NIH’s Microbiome Project; the All of Us Project (the Precision Medicine Initiative), and the recently-announced program to study molecular changes during exercise. Any one of these endeavors could include ME/CFS patients, but none did. The Ghost took Scrooge to offices around the country, to scientists with good ideas, who just needed funding to test hypotheses and gather data. Scrooge also saw his colleagues cheering behind his back, laughing raucously: “Three cheers for Scrooge’s Heterogeneous Zones!”

Worst of all was the Ghost of ME Future, showing psychiatrists, the school system, and child protective services ganging up on Laura Tompkins, ‘proving’ that she was harming Tiny Tim Tompkins with a bad home environment, and taking him away. Tiny Tim ended up institutionalized, where he never improved, but merely existed. The fight forced Laura into a crushing relapse of her own. Most of all she was despondent, feeling she had failed as a parent.

Finally, Scrooge’s own funeral, sparsely attended.

Scrooge awoke. It was Christmas Day. Lest he be tempted into thinking it was all a dream (or a virus), his living room floor was still carpeted with printouts.

He wrote Ms. Tompkins, wishing her a Merry Christmas. He wrote her school district, offering to come and speak to officials about ME/CFS. Soon, Scrooge became like a second father to Tiny Tim, and served as an expert witness in defense against Münchausen Syndrome by proxy charges.

Most of all, Scrooge visited his colleagues at NIH, showing them how interesting a problem ME/CFS was. He worked tirelessly to reverse the stereotypes of ME patients as whining, middle class women. He helped write funding announcements, review ever increasing numbers of grant proposals, and promote collaborations and cutting edge technologies. And when, years later, Scrooge passed away, he was hailed as a hero by the patients who had despaired of ever securing his help.

From Charles Dickens’ original story:

Some people laughed to see the alteration in him, but he let them laugh, and little heeded them; for he was wise enough to know that nothing ever happened on this globe, for good, at which some people did not have their fill of laughter in the outset…

The End

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RFA Ticker, 12/26/16


No Christmas joy for ME/CFS research at NIH. Only two RFAs were issued last week, and neither were the RFAs promised to us. It appears that the RFAs are coming . . . at some point. Dr. Vicky Whittemore told me by email last week that the continuing budget resolution will not hold up the RFAs. She said, “The funds are committed, so it won’t impact the RFAs.

After ME Action, Terri Wilder and I called on Dr. Collins to keep the promise he made to the ME community, Carol Head of Solve ME/CFS Initiative was also in touch with Dr. Whittemore. Carol told me, “She has confirmed that the NIH is working hard through an intensive process involving many institutes, to get the RFA’s out the door as soon as possible.  Francis Collins is well aware of, and supports, the NIH commitment to the ME/CFS Funding Opportunity Announcements.”

I want to be very clear about something: NIH itself publicly said the RFAs are “expected to be published in December 2016”. That is not a deadline that we set. Nor is it an arbitrary date pulled out of the advocacy hat. NIH stated the RFAs were expected in December. By putting that date in the Federal Register Notice of Intent, NIH made it seem like a sure thing. It’s not as formal or binding as Dr. Whittemore’s statement at the May 2016 CFSAC meeting that the RFAs would be issued in June or July 2016.

It should be obvious that when NIH publishes something in the Federal Register, researchers and others will rely on that information. How many ME researchers are holding off on other grant applications because they are waiting for those RFAs? I do not doubt that Dr. Whittemore and others are working hard to get the RFAs out the door. But obviously, the Institute support is not there. And despite Dr. Collins supporting the commitment to the RFAs, that is clearly not carrying enough weight internally to speed things along.

I believe that an internal statement from Dr. Collins to whatever Institutions or individuals who are holding up the RFAs would go a long way to solving the problem. When people know the Director wants something, that thing usually happens. So, despite everything else on my personal and advocacy plate today, I am emailing Dr. Collins again to remind him of his promise to us. Please join me.

Here are the current cumulative RFA numbers:

FY 2017 FY 2016
RFAs Issued 121 352
Dollars Committed $637,707,563 $2,840,680,617

And here is the table for FY 2017 alone:

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
12/19/16 2 $10,000,000 Zero
12/12/16 28 $125,950,000 Zero
12/5/16 14 $114,800,000 Zero
11/28/16 10 $47,660,000 Zero
11/21/16 6 $42,780,000 Zero
11/14/16 6 $44,350,000 Zero
11/7/16 10 $25,490,563 Zero
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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Dr. Collins: Keep Your Promise!

This is a call to action. I hope you will join me in demanding that Dr. Collins keep NIH’s promise to the ME community. (Edited to add: this action originated with MEAction. I’m just helping to boost the signal.)

The NIH announced that it would fund ME research by publishing two Funding Opportunity Announcements (FOA) by December 2016, but it is about to miss its first deadline.

On Oct. 21st, the NIH released two Notices of Intent to publish two FOAs for ME/CFS by December 2016. As of today, they have not been released.  The two FOAs are intended to establish collaborative research centers and a data management and coordination center. These FOAs are expected to provide set-aside funding, critical to attracting researchers driven away by a lack of funding.

Join ME activists from around the country to demand that NIH Director, Dr. Francis Collins, keep his promise to publish two FOAs, which will provide funding to researchers investigating ME.

Join us in tweeting, emailing or calling him now before the offices close for the holidays. See sample scripts below. We will not wait any longer for Dr. Collins to act on his word.

Speaking about the lack of FOAs for ME, activist Jennie Spotila said, “More than halfway through December, the promised RFAs for the ME/CFS research consortium and data center have yet to materialize. Will we see them this month? Your guess is as good as mine.”

Terri Wilder, an activist from New York, stated,  “Francis Collins has disappointed the ME community once again with his broken promises. When is the charade going to end?  People with ME demand that the two FOAs be released now! Our lives depend on it.”

Suggested tweets:

@NIHDirector Where are the ME Funding Announcements?  Release them NOW!
@NIHDirector You promised ME Funding.  People are sick. Do your job!
@NIHDirector Release the ME FOAs NOW!
@NIHDirector People are sick. Release the ME FOAs NOW!
@NIHDirector You have had more than a year to keep your promise and issue RFAs for ME. Do it now!

Suggested email:

E-mail Address:

Dear Dr. Collins,

My name is _____ I have been sick with ME for ____ years. I have lost ____  OR

My name is ____ My daughter/son/family member has been sick with ME for ____ years. She/he/they has suffered ___ and lost ___

(Keep it brief so that you can get quickly to the ask below)

I was thrilled to read the NIH’s two Notices of Intent to publish two Funding Opportunity Announcements (FOA) for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) by Dec. 2016.

To date, they have not been released. The FOAs are critical to moving research forward for a disease that is destroying the lives of as many as 2.5 million Americans. We will not accept neglect any longer.

Dr. Collins, we call on you to keep your word. Release the two FOAs now.

In urgency,

Sign your name

Suggested phone call:

Phone Number:  301-496-2433

My name is _____ I have been sick with ME for ____ years. I have lost ____  OR

My name is ____ my daughter/son/family member has been sick with ME for ____ years. She/he/they has suffered ___ and lost ___

I’m calling to leave a message for Dr. Francis Collins. I am asking Dr. Collins to release the Funding Opportunity Announcements that he promised for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) now. The FOAs are critical to moving research forward for a disease that is destroying the lives of as many as 2.5 million Americans. We will not accept neglect any longer.

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